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Can a massive genetic library unlock the secrets of ALS?

NCT ID NCT05474235

Knowledge-focused Sponsor: Mayo Clinic Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Aug 27, 2026 · Last updated Aug 28, 2026 · Updated 1 time

Summary

Researchers at Mayo Clinic are collecting blood samples and clinical information from people with ALS, their family members, and healthy controls. The goal is to create a large repository of genetic material that scientists can use to study how genes contribute to ALS. This study does not test a treatment; it focuses on gathering data to support future research into the causes of the disease.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If this repository grows, it could help researchers identify genetic factors that contribute to ALS, potentially pointing toward new targets for treatment or prevention.
What could go wrong
This is an observational study, not a treatment trial. It may take years to gather enough data, and the genetic findings may not directly lead to therapies.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 3,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2007

Expected to finish

Dec 2038

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Eligible subjects with ALS or suspected ALS or family history of ALS will be identified from patients seen in the Department of Neurology at Mayo Clinic Jacksonville. Inclusion criteria include standardized diagnostic criteria for ALS as used in ALS therapeutic trials and patients with clinically suspected ALS.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria ALS or Suspected ALS Patient * Clinical diagnosis of possible, laboratory-supported probable, probable or definite ALS according to modified EL Escorial criteria, suspected ALS according to original El Escorial criteria, or diagnosis of a neurodegenerative disorder with evidence of ALS plus extramotor features; OR * Blood relative (first, second or third degree) with history of ALS or neurodegenerative disorder with evidence of ALS plus extramotor features; OR: * A clinical suspicion or referral for ALS; * \> 18 years of age; * Willing and able to give signed informed consent or assent that has been approved by the Institutional Review Board (IRB). Blood Relative of ALS Patient * Family history (first, second or third degree blood relative) of ALS or other motor neuron disease; * \> 18 years of age; * Willing and able to give signed informed consent that has been approved by the Institutional Review Board (IRB). Healthy Control * No personal or family history (first, second or third degree blood relative) of ALS or other motor neuron disease; * \> 18 years of age; * No personal history of other neurodegenerative disease (i.e., Alzheimer disease, Parkinson disease); * Willing and able to give signed informed consent that has been approved by the Institutional Review Board (IRB). Exclusion Criteria: ALS or Suspected Patient • Limited mental capacity rendering the subject unable to provide written informed consent or assent or comply with standard phlebotomy procedures. Blood Relative of ALS Patient • Limited mental capacity rendering the subject unable to provide written informed consent or comply with standard phlebotomy procedures. Healthy Control Subject * Personal or family history of dementia or other neurodegenerative disease (Parkinson disease, Alzheimer disease, etc.); * Limited mental capacity rendering the subject unable to provide written informed consent or comply with standard phlebotomy procedures.

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Conditions

The condition(s) this trial relates to.

amyotrophic lateral sclerosis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Amyotrophic lateral sclerosis

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Mayo Clinic Florida

    RECRUITING

    Jacksonville, Florida, 32224, United States

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